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“Megan sent me a text that morning saying she had taken her medication,” Theresa said.

“I texted her back at 9.20am saying I had booked the tickets for London as she wanted to go there for her 19th birthday on December 9.

“There was no answer, so I went home and told her. She just grumbled like teenagers do as she hated me being in her room and I just laughed.

“At 11.50am, Melissa (her sister) went upstairs to get her out of bed and to see if she wanted to go shopping in Gainsborough.

“She shouted ‘mum’ and I knew, I just knew. I dialled 999 after I found her face down and I knew she had passed because she had changed in colour.

“I was told on the phone to do CPR – a part of me wanted to stop, but another part knew I had to carry on.

“I can remember shouting out of her window for help but it didn’t come.

“Melissa was shouting to see if everything was alright but I just couldn’t tell her.”

Megan Cook died from SUDEP earlier this year (Image: Submitted)

Paramedics, LIVES responders and the air ambulance then arrived at the scene.

However, it wasn’t until all the checks had been completed that it was confirmed Megan had died.

Theresa told Lincolnshire Live that not being able to prepare for saying goodbye has been the hardest thing.

Megan Cook with her mum, Theresa and dad, Simon (Image: Submitted)

She said: “Megan was so funny. I just remember her laughing in the sea when we went to Turkey in July and the way she held her arms out for a hug.

“We [Theresa and Megan’s dad, Simon] bought her a shih tzu maltese cross puppy three weeks before she died but she never got to walk it because of the injections.

“Arranging the funeral was hard as it is something we never thought we would have to do.

“Thinking about what flowers we needed to arrange, what songs we should choose, what she should wear, how her hair should be done is something you never discuss with an 18-year-old.

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She added: “I can still smell her. It is really, really hard knowing I won’t see her walk down the stairs or hear her laugh again.

“I don’t know how I am going to live – I can’t imagine being happy again.

“I feel my heart breaking – I am still in total disbelief.”

Megan Cook (Image: Submitted)

A few weeks after the family had laid the teen to rest on September 21 they got the call from the coroner to confirm that Megan had died from Sudden Unexpected Death in Epilepsy (SUDEP) – a condition Theresa says she had no idea about.

“I had never heard of SUDEP,” the mum, who has fostered 50 children, said.

“There is no research. No one knows why it happens but it has something to do with the pain.

“We saw the neurologist and she had MRI and CAT scans, but everything was clear.

“That is what is most upsetting, that nothing was detected.”

What is SUDEP?

Sudep

Sometimes a person with epilepsy dies during or following a seizure for no obvious reason. This Sudden Unexpected Death in Epilepsy (SUDEP) is uncommon and in some cases may be preventable.

About SUDEP

For many people, epilepsy is a condition which can be well-managed and has little or no impact on their life. For others, ongoing seizures mean that epilepsy has a long-term impact on them and their ability to have a ‘normal life’. Like some other medical conditions, epilepsy can be a cause of death in some individuals, although this is not common.

There are more than half a million people with epilepsy in the UK. Around 600 people die each year due to Sudden unexpected death in epilepsy (or SUDEP). Although the percentage of the population who are affected by SUDEP is relatively low, every death due to SUDEP is thought to be potentially avoidable.

SUDEP can be a difficult subject to talk about. It can be upsetting or worrying to think about. Knowing a little about SUDEP and the risks around having seizures might help you to work out what risks apply to you and how to reduce them so you can feel more in control.

Why does SUDEP happen?

The reasons for SUDEP are not clearly understood. As SUDEP is thought to happen either during or following a seizure, it is possible that it is due to a problem with the person’s heart or breathing during or following the seizure.

The risk factors around SUDEP

Although we don’t know for certain why it happens, there are some situations that are thought to make SUDEP more likely in certain people.

As SUDEP is thought to happen during or following a seizure, uncontrolled or poorly controlled seizures are a risk.

SUDEP is thought to be more likely in people with frequent seizures, particularly convulsive seizures, than in people with infrequent seizures.

It is worth remembering that the risk of SUDEP varies from one person to another but some of the risks around SUDEP can be reduced.

Talk to someone

If you are concerned about SUDEP, for yourself or for someone else, talk to your neurologist about what any risks mean for you and your situation and how to lower the risk of SUDEP.

Epilepsy deaths are not common but do happen, and while not all deaths are avoidable, some are. SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths. They are the only UK charity specialised in supporting and involving people bereaved by epilepsy.

If you have been affected by an epilepsy death please visit www.sudep.org or contact the SUDEP Action support team on 01235 772852.